Ciaran and I felt that now was a good time to start sharing information about our little man.
It's for couples/ families that discover that their child has a complication.
Archie has what's called a Hypoplastic left heart and a Narrowed Aortic arch.
These are 2 separate defects within the heart.
The Aortic arch is easily repaired with open surgery by just building up tissue and widening where it's narrowed. Obviously a major operation but not overly risky.
The hypoplastic left heart is where the left ventricle is smaller than the right and if it's too under developed he will have to have an operation when he's born to try and take the pressure off. Quite a bit more complicated.
both these links are to download the information on Archie's conditions, what operations he has to have and what the risks are. Promise it's no virus.
If you want to make a small donation too. It's an amazing cause. Honestly guys! What they do up there in Bristol is amazing.
Now, it's the most terrifying feeling getting to a scan at 20 weeks and being told something isn't right. However it's what those anomaly scans are for.
Side note... Make sure your bladder is full. We had to go back at 23 weeks. Which meant that we didn't find out something was wrong until then.
It is amazing though because everything moves so quickly from there. They got us an appointment With a specialist sonographer the next day who confirmed there was a heart condition. Then 2 days after that we were in Bristol and Archie was diagnosed! They do not hang about !! From there its getting your head round it. When they tell you that your little bundle of joy will be very poorly you want to fall apart or look for someone to blame (usually yourself). Unless your me and you try and find a reason behind it.
With Congenital heart abnormalities (heart problems found in the uterus) there is no way of explaining it. Sometimes it's genetics but you won't know that until the test the cord blood either before or after birth. With this abnormality it just happens for no reason. Normally within the first 12 weeks of gestation.
My advice would be... keep calm. The facts are damn scary and very real but they have to tell you. At the end of the day that little one needs you calm to help them grow!
They do give you the option to terminate which is every woman's choice. We chose to let him make that decision, it's what you have to do as a parent.
His quality of life will be fairly normal. He will probably get tired more easily and not be able to do much cardio but that's okay.
To Ciaran and I the risks aren't enough to consider that.
So admittedly over the past week I've been getting very scared and worried about him and whether he will cope, it's totally normal and we will always have good and bad days.
However today. Today was very positive. We went back for a follow up appointment to see how his heart is progressing. His left side is growing in a good correlation to the right and he still has very good functions! So fingers crossed he won't need the serious operation! Though the docs said it COULD still go the other way he felt very positive and was actually smiling.
So as we are at this mid point now where things are on an up and we are proud of our little man. My advice would be. When you think ahead. Think to each scan and not too far in the future! I'm terrible for that... jumping to the final outcome. But I was that convinced today would be bad news I cried with shock when it wasn't! ! Expect the worse and hope for the best. I ran my head raggid trying to understand why us? What could we cope with next? How on earth do you cope with something like this? But today all that pain feels eased. Like I said there will be good days and bad. Cry. Scream. Shout. Throw things. But please don't over think and stress any further than each step because you never know what could happen.
Just trust that your specialists know what they are doing. Accept that they will have complete control of your baby and be happy that they are taking good care of them.
Our specialist nurse took us to neo natal today. She informed us that we would get a quick hello with Archie and he would be brought straight to this ward. Ciaran will go with him but I have to stay on the ward for 6 hours after birth. Yes it's a bit upsetting that I can't have that cuddle but I'd rather he be in the best hands.
On the neo natal unit he will be hooked up to monitors, given meds and poked and prodded. It was good to see some of the babies today as it prepared us for what our little boy would look like. It's not like Casualty guys. It's very calm and relaxed and you can be there 24 hours if you want. ( the nurses will kick you out for your need to sleep).
The way they prepare you makes you so relaxed. Where better to be than Bristol? The Heart specialist hospital!
So guys 12 weeks countdown begins... let's see how this goes. Thank you for reading. If there's any HLHS families that want to post comments and help set people at ease. Or you want to know more. Please feel free. I'd sure love to know more if you can tell me.
Please bare in mind that this is how myself and Ciaran cope with this and not all families are the same. It's just some advice parent to be - to - parent to be.
Try not to feel alone guys. Congenital heart defects are quite common!
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